Scleroderma Research Foundation

We're excited to share our 2023 SRF Annual Report, highlighting the many ways we worked together last year to accelerate research and shine a global spotlight on scleroderma. In 2023, your partnership enabled us to: 🔹 Revolutionize the way scleroderma clinical trials are done with the launch of CONQUEST. 🔹 Recruit and empower top researchers to uncover the causes, develop treatments, and work collaboratively towards eradicating scleroderma. 🔹 Expand educational content and remain a trusted resource for those living with this disease. Most importantly, ALL of our progress is made possible through the support, dedication, and generous partnership of this inspirational scleroderma community. Thank you so much for being all in on our shared goal of one day ending this disease. Read now: https://bit.ly/3Bbw673 #scleroderma #srfcure #sayscleroderma #sclerodermaresearch

Want to learn how to ease some scleroderma symptoms without medications? Check out this 2024 Patient Forum highlight 🎥 In this clip from the 2024 Patient Forum, Dr. Ankoor Shah (Associate Professor of Medicine, Duke University) reviews options for the non-pharmacological management of systemic sclerosis. His session covers innovative approaches for managing Raynaud's Phenomenon, digital ulcers, GI symptoms, joint pain, contractures, and fatigue. To learn more about symptom management in systemic sclerosis, check out the full session featuring Dr. Shah on our YouTube channel: https://bit.ly/3zfNya0 The 2024 SRF Annual Patient Forum, “Collaborating for a Cure,” took place on June 3 as part of our participation in Scleroderma Awareness Month. The event offered a range of educational sessions focused on symptom management, the latest research developments, and how you can contribute to the search for a cure. Interested in learning more about the latest advancements in scleroderma management? Explore additional sessions from this year’s event on our full Patient Forum 2024 YouTube playlist: https://bit.ly/3MK7Yv3 #sclerodermaresearch #srfcure #scleroderma

"I'll forever be grateful for an early diagnosis," says Alex P., who was diagnosed with both scleroderma and interstitial lung disease (ILD) earlier this year in 2024. "I am lucky. My PCP listened, and I had a rheumatologist who took me seriously." In December 2023, Alex started experiencing numbness and tingling in her fingers and toes, which she initially dismissed. "I ignored it at first," she recalls, "but as it persisted, I went to see my PCP." Her doctor suspected Raynaud's phenomenon and began treating Alex for low B12. It wasn’t until she noticed her fingers changing colors that the Raynaud's diagnosis was confirmed. By January, Alex began experiencing joint pain in her hands, which soon spread to her entire body. After being referred to rheumatology, she received a different diagnosis in April: scleroderma with early-stage ILD. Living with ILD has brought additional challenges, like a persistent cough and increased fatigue. "It’s overwhelming to be told you have lung disease. But with medication and patience, it can be manageable." Scleroderma has deeply impacted Alex's life, both physically and mentally. "The hardest thing for me has been the mental toll of the diagnosis. I don't feel like the same person I used to be," she says. "I have to work every day to not let the diagnosis define me and my life. Like Dory, you just keep swimming—you don't give up." These days, she is passionate about raising awareness. "I want scleroderma to be a word people know," Alex says. "When I was diagnosed, I had to educate everyone around me. I want the next wave of people diagnosed to not have that burden." For Alex, advancing research is a vital step toward better treatment for scleroderma. "Scleroderma is rare, which means fewer treatments. I would love to have more options, and research is the key to that," she says. "Understanding what causes scleroderma could help prevent others from living with this disease." We are deeply grateful to Alex for sharing her story. This ILD Day, we invite you to join us in spreading awareness around this condition. Learn more about how you can get involved: https://bit.ly/47ekZ9s Pictured: Cider (left) and Alex P. (right)

You're invited to Cool Comedy • Hot Cuisine, honoring John Mayer and Jeff Ross! Join us for an unforgettable evening of laughter and amazing food on Tuesday, October 29, at the Fairmont Century Plaza in Los Angeles, CA. We are thrilled to celebrate John Mayer and Jeff Ross with the Bob Saget Legacy Award for their commitment to advancing scleroderma research in Bob's memory. This award recognizes those who have followed in Bob's footsteps to shine a spotlight on scleroderma and raise funds for a cure. Cool Comedy • Hot Cuisine is known for featuring the world's finest comedians and performers—and this year is no exception! Whitney Cummings, Alex Edelman, John Mayer, Jeff Ross (Event Host), and more special guests to be announced are donating their time and talent to support this vital cause. All proceeds will directly benefit the SRF’s mission, supporting our cutting-edge research program and educational outreach. ✨ Purchase tickets or make a donation, and help us realize Bob's vision of ending scleroderma: srfcure.org/cchc ✨ With deep gratitude to the Event Co-Chairs—Susan Feniger, Regina Hall, Caroline Hirsch, and Kelly Rizzo—for their hard work in bringing this event to life.

“It felt like I was hit by a truck," recalls Ron S. (dx 2015) about his first scleroderma symptoms. In this video, he opens up about his journey with diagnosis and how he’s managing life with the condition. Thank you so much to Ron for putting together this video and for sharing your story with the SRF community. At the Scleroderma Research Foundation, research is at the center of all we do. To learn more about how the SRF is advancing research towards a cure for scleroderma, please visit our website: srfcure.org #sclerodermaresearch #srfcure #scleroderma #sayscleroderma

What is interstitial lung disease (ILD), and how is it related to scleroderma? 🫁 ILD is a serious complication that can arise from scleroderma and occurs when there is inflammation and scarring to the lung tissue that supports the alveoli—the air sacs within the lungs. Over time, this scarring makes it difficult to breathe and reduces the amount of oxygen that can reach the bloodstream. About 15% of patients with systemic sclerosis have ILD. On Wednesday, September 18, the Scleroderma Research Foundation is joining nine partnering organizations to host the 4th Annual National Interstitial Lung Disease (ILD) Day. Help us spread the word—share information about ILD with your networks, family, and friends. Our commitment to fighting ILD includes not only raising awareness but also advancing research. CONQUEST, led and developed by the SRF, is a groundbreaking platform clinical trial designed to rapidly evaluate possible new treatments for scleroderma. In its first iteration, it's specifically examining possible new therapies for scleroderma-related ILD. CONQUEST is now enrolling patients, and we encourage individuals who have SSc-ILD to consider participating. The more we raise awareness around ILD, the closer we get to better treatments and improved outcomes for people living with this condition. #ILDDay #SRFcure #sclerodermaresearch #scleroderma #sayscleroderma

“My father was the strongest man I knew, and I miss him every single day,” says Samantha C. of her father, Louis P. (dx 1990), who passed away in 2021. For the past three years, she has held a Facebook birthday fundraiser benefiting the Scleroderma Research Foundation in her father’s memory. "On my birthday, it's hard to celebrate when I've lost a piece of who I am. That's why I hold a fundraiser in his memory—to give towards research and resources, and that's all I need each year,” she says. Louis was born in Amsterdam, Netherlands, on July 18, 1940, and immigrated to the United States with his family at the age of 16, seeking a new beginning after World War II. A devoted husband to his wife Maria and father to six children, Louis faced numerous health challenges throughout his life. He was diagnosed with diabetes in 1990, which required significant lifestyle adjustments. Not long after, he began experiencing pain and strange sensations in his fingers, which he described as "tiny rocks" under the skin. After visiting multiple doctors, he finally received a diagnosis: CREST syndrome (or limited scleroderma). Louis's journey with scleroderma proved extremely difficult for him, as Louis endured severe pain, toe amputations, calcinosis in his fingertips, and persistent itchy, flaky skin. Samantha’s fundraisers have become a meaningful way to honor her father's memory and contribute to the Scleroderma Research Foundation’s mission to find better therapies and ultimately, a cure. “Scleroderma research is so important because many are suffering, and they should know that there is a community of people out there that are here to support them,” Samantha says. “Scleroderma may not be known to all, but with our help, it can be.” You can make a difference, too. Consider hosting a Facebook fundraiser like Samantha's and contribute to the search for a cure for scleroderma. Learn more about how to hold an online fundraiser: https://bit.ly/4g4WvDy The Scleroderma Research Foundation extends its deepest gratitude to Samantha for sharing her father's story and for her continued efforts to raise awareness and support research. (Pictured: Louis with daughter Samantha)

What genetic factors drive juvenile systemic sclerosis? 🧬 In this video, Dr. Kathryn Torok, SRF-funded researcher and pediatric rheumatologist at Pittsburgh Children's Hospital, discusses her work on the Identification of Novel Pathogenic Genes in Juvenile Systemic Sclerosis project—AKA the Trios project. This study examines genetic factors that could lead to better treatments for young people living with juvenile systemic sclerosis. Watch the video to learn more! At the Scleroderma Research Foundation, research is at the center of all we do to find a cure. We find, fund, and facilitate the most promising, highest-quality research aimed at improved therapies and ultimately, a cure for scleroderma. To learn more about research projects funded by the SRF, please visit our website or link in bio: https://lnkd.in/g3S5abY9 #srfcure #sclerodermaresearch #scleroderma #sayscleroderma

Mark your calendars for an informative ILD Day Webinar! 🫁 The Scleroderma Research Foundation is proud to join nine partnering organizations in hosting the 4th Annual National Interstitial Lung Disease (ILD) Day. On September 18 at 12 p.m. CT, join the Pulmonary Fibrosis Foundation for "The Journey to Diagnosis: Process, Evaluation, and Your Care Team," featuring Dr. Sonye Danoff (Assistant Professor, Johns Hopkins Medicine). This insightful webinar will cover how doctors recognize ILD, finding the right treatments, understanding your care team's roles, and how to advocate for yourself. About 15% of people living with scleroderma suffer from ILD, which is one of the most serious complications of scleroderma. ILD occurs when there is inflammation and scarring to the lung tissue that supports the alveoli—the air sacs within the lungs. Over time, this scarring, called pulmonary fibrosis, makes it difficult to breathe in and out, and reduces the amount of oxygen that can reach the bloodstream. Registration for the webinar is open now—secure your spot at this informational event: https://bit.ly/3yELVTe Can't make the event? No worries! Registrants will be sent a link to the recording and all webinars are uploaded to the PFF YouTube channel. ILD Day is presented by the following partners: Arthritis Foundation, PF Warriors, National Scleroderma Foundation, Foundation for Sarcodosis Research, Pulmonary Fibrosis Foundation, The Myositis Association, Scleroderma Research Foundation, Sjogren's Foundation, and the Wescoe Foundation for Pulmonary Fibrosis.

Wine & Dine and Give Back! 🍷🍽️ On June 24th, Grove Wine Bar Co-Founder Beth Lasita hosted a fundraiser for Scleroderma Awareness Month. All five Grove Wine Bar locations participated, generously donating 10% of their net sales to the Scleroderma Research Foundation. In total, they raised over $5,500 to advance research toward a cure. Beth and her husband Tony are longtime Cure Crew members who are dedicated to raising funds and awareness in honor of Beth’s mother, Betty, who lost her battle with scleroderma 15 years ago. "29 years after my mother’s diagnosis, we still have no cause or cure," Beth says. "But we do have medical procedures and strong community support to help those living with the disease. In mom’s memory, we continue to advocate for awareness and finding a cure!" We are deeply grateful for the unwavering support of Beth, Tony, and their local community, whose impactful efforts are helping those with scleroderma live fuller lives and bringing us closer to a world without scleroderma. Learn more about how you can make a difference by joining the Cure Crew: https://bit.ly/4dJLi9J or link in our bio. #srfcure #sclerodermaresearch #scleroderma #sayscleroderma